Amy Waller1,2, Rob Sanson-Fisher3,4, Scott D Brown5, Laura Wall5, Justin Walsh3,4. 1. Health Behaviour Research Collaborative, Priority Research Centre for Health Behaviour, School of Medicine and Public Health, University of Newcastle, Callaghan, Australia. amy.waller@newcastle.edu.au. 2. Hunter Medical Research Institute, New Lambton Heights, NSW, 2305, Australia. amy.waller@newcastle.edu.au. 3. Health Behaviour Research Collaborative, Priority Research Centre for Health Behaviour, School of Medicine and Public Health, University of Newcastle, Callaghan, Australia. 4. Hunter Medical Research Institute, New Lambton Heights, NSW, 2305, Australia. 5. Department of Psychology, The University of Newcastle, University Drive, Callaghan, NSW, 2308, Australia.
Abstract
OBJECTIVES: To explore in a sample of medical oncology outpatients and their nominated support persons (SPs): (1) the relative influence of pain, consciousness and life extension on end-of-life choices using a discrete choice experiment (DCE); (2) the extent to which SPs can predict the choices of index patients and (3) whether having a previous end-of-life discussion was associated with dyad agreement. METHODS: Adult medical oncology patients and their SPs were approached for consent to complete a survey containing a DCE. Participants chose between three unlabelled care scenarios characterised by three attributes: pain (mild, moderate or severe), consciousness (some, half or most of time) and extension of life (1, 2 or 3 weeks). Respondents selected (1) most-preferred and (2) least-preferred scenarios within each question. SPs answered the same questions but from patient's perspective. RESULTS: A total of 110 patients and 64 SPs responded overall (42 matched patient-SP dyads). For patients, pain was the most influential predictor of most- and least-preferred scenarios (z = 12.5 and z = 12.9). For SPs, pain was the only significant predictor of most and least-preferred scenarios (z = 9.7 and z = 11.5). Dyad agreement was greater for choices about least- (69%) compared to most-preferred scenarios (55%). Agreement was slightly higher for dyads reporting a previous EOL discussion (68 versus 48%; p = 0.065). CONCLUSION: Patients and SPs place significant value on avoiding severe pain when making end-of-life choices, over and above level of consciousness or life extension. People's views about end-of-life scenarios they most as well as least prefer should be sought.
OBJECTIVES: To explore in a sample of medical oncology outpatients and their nominated support persons (SPs): (1) the relative influence of pain, consciousness and life extension on end-of-life choices using a discrete choice experiment (DCE); (2) the extent to which SPs can predict the choices of index patients and (3) whether having a previous end-of-life discussion was associated with dyad agreement. METHODS: Adult medical oncology patients and their SPs were approached for consent to complete a survey containing a DCE. Participants chose between three unlabelled care scenarios characterised by three attributes: pain (mild, moderate or severe), consciousness (some, half or most of time) and extension of life (1, 2 or 3 weeks). Respondents selected (1) most-preferred and (2) least-preferred scenarios within each question. SPs answered the same questions but from patient's perspective. RESULTS: A total of 110 patients and 64 SPs responded overall (42 matched patient-SP dyads). For patients, pain was the most influential predictor of most- and least-preferred scenarios (z = 12.5 and z = 12.9). For SPs, pain was the only significant predictor of most and least-preferred scenarios (z = 9.7 and z = 11.5). Dyad agreement was greater for choices about least- (69%) compared to most-preferred scenarios (55%). Agreement was slightly higher for dyads reporting a previous EOL discussion (68 versus 48%; p = 0.065). CONCLUSION:Patients and SPs place significant value on avoiding severe pain when making end-of-life choices, over and above level of consciousness or life extension. People's views about end-of-life scenarios they most as well as least prefer should be sought.
Authors: John J You; James Downar; Robert A Fowler; François Lamontagne; Irene W Y Ma; Dev Jayaraman; Jennifer Kryworuchko; Patricia H Strachan; Roy Ilan; Aman P Nijjar; John Neary; John Shik; Kevin Brazil; Amen Patel; Kim Wiebe; Martin Albert; Anita Palepu; Elysée Nouvet; Amanda Roze des Ordons; Nishan Sharma; Amane Abdul-Razzak; Xuran Jiang; Andrew Day; Daren K Heyland Journal: JAMA Intern Med Date: 2015-04 Impact factor: 21.873
Authors: Stephanie Johnson; Josephine Clayton; Phyllis N Butow; William Silvester; Karen Detering; Jane Hall; Belinda E Kiely; Jonathon Cebon; Stephen Clarke; Melanie L Bell; Martin Stockler; Phillip Beale; Martin H N Tattersall Journal: BMJ Open Date: 2016-12-01 Impact factor: 2.692